Blog / 2021 / My Endo Journey: How I Got a Clean(ish) Bill of Health

March 29, 2021

In honor of Endometriosis Awareness Month, I’ve decided to share about my healing journey in some detail. I remember searching for such stories after I was first diagnosed. It didn’t matter that every woman’s path with the disease was so different: I was desperate for any hints. Hopefully, my account will help other women make the right choices for themselves.

From diagnosis to almost-gone, it was a decade in all, but my endometriosis actually started well before my lady bits were officially confirmed as broken.

For me, the disease manifested not in traumatic periods but with debilitating migraines and painful sex, which went on for years and impacted my relationship with my partner. At some point early on in our relationship, he convinced me to go to a gynecologist to ask about the discomfort I was having. It was a good idea and I was grateful for his encouragement, but I lost my nerve after I met the doctor and she demanded multiple times that I do an STI test. I told her I didn’t want it—I was 25 or so at the time and struggling enough as an artist that I didn’t want to incur the extra expense—but her insistence intimidated me. I didn’t feel like being vulnerable with her.

A few weeks later, after being billed for a test I didn’t consent to, I called the gynecologist’s office to complain and was told that the doctor did the secret STI screening because “people your age sleep around a lot.” I told them to take their doctor-knows-best slut-shaming, wrap it up in their bill, and then light it all on fire. I would not pay, and I would not see this doctor again.

My partner was worried that I hadn’t gotten an answer for the pain—worried that the problem would blow up at some point—and, sure enough, a couple years later, an enormous endometrioma on my left ovary ruptured. At first, I downplayed the pain. I stayed away from the hospital for a day or two, writhing and sobbing and hoping beyond hope that my body would fix itself, because the idea of hospital bills was scarier than anything else I could imagine.

When I finally went to the ER, I was admitted under Dr. Slut-shame, but I didn’t initially remember it was her just from hearing the name, which, in reality, is much less colorful than my pet name. I wouldn’t be seeing her until the next morning when she’d determine if the inflammation had gone down enough for us to do an exploratory surgery, which would likely result in a positive endometriosis diagnosis as well as the removal of any cysts and lesions.

That evening, as we snuggled carefully in the hospital bed, it was my partner once again who insisted on facing the reality of the situation. If I was going to be cut open, I desparately needed more information and I needed to get it from someone I was sure I could trust. He suggested that I call the father of one of my close friends, a gynecologist in a town nearby. When we told friend-dad Dr. Slut-shame’s real name, his response was: “he’s an excellent surgeon. I send all my endometriosis patients to him.” Him? It turned out that there were two gynecologists at this hospital with the same last name, one slut-shaming woman and one friend-dad-approved man.

With some difficulty, I got myself switched over to Dr. Friend-Dad-Approved and, in the fall of 2009, had my first laparoscopic surgery. Out came a ruptured endometrioma that had been the size of a grapefruit and whatever lesions that could be identified. The bill for this work was just as horrifying as I thought it would be, but three emergency relief grants ultimately rescued me from that catastrophe.

At the follow-up after the operation, Dr. Friend-Dad-Approved wanted to induce a temporary menopause using Lupron and, when I refused that, he wanted me on the Pill. At first, I resisted, because the Pill’s side effects are many and awful for me. But, after an ultrasound uncovered gobs of new cysts, I started taking oral contraceptives for a while, eventually changing to the Nuvaring briefly. The full account of those treatments is here.

Around this time, I became a vegetarian, thinking that the hormones and other chemical crap in American meat probably wasn’t helping my lady bits. I also talked Dr. Friend-Dad-Approved into allowing me to use a hormonal IUD to treat my endo. This was towards the end of 2010, when the Mirena Coil was already authorized for this use in the UK. In fact, that’s how I’d heard about it: through an online endo forum where a British woman was raving about hers. I think that the Mirena was later approved for endo treatment in the US and then maybe unapproved. At least, that’s what my current gynecologist, who I really don’t trust, told me years later. In any case, I talk about the Mirena Coil at some length here.

Dr. Friend-Dad-Approved was okay most of the time, but he could also be very stupid. My partner usually came with me to gynecologist visits and, whenever I talked about the continuing pain with sex, Dr. Friend-Dad-Approved inevitably made a comment about my sweetheart cutting his penis shorter to help me out. This “joke” makes me cringe for so many reasons, but what upsets me most is that the doctor was clearly uncomfortable talking about sex with his patient in front of the patient’s partner. The immaturity of this reaction on the part of a gyne-freaking-cologist still infuriates me.

Another favorite “joke” of Dr. Friend-Dad-Approved was to suggest that I get pregnant. The logic was that it would pause my cycle for nine months and allow my body to heal from the endo. At first, my be-a-good-girl cultural training kicked in, and I responded by quipping: “you’ve obviously been talking with my mother-in-law.” But after the nth time the doctor recommended I make a whole new person just so I wouldn’t menstruate for a while, I asked him to stop making this joke.

A year and a half after I got the hormonal IUD, Dr. Friend-Dad-Approved did a second surgery. This time, my left ovary, which was again the site of a huge cyst, got the boot along with my left fallopian tube and a number of lesions. After the operation, I overhauled many aspects of my life in order to treat my endo without relying entirely on hormones. I did acupuncture and Chinese medicine, got off of gluten and changed my whole approach to eating. I did physical therapy, and all the while I kept my Mirena in.

Four and a half years after the initial insertion, I started to have more pelvic pain again and my skin broke out in a major way. I surmised that the Mirena’s hormones were wearing off, so I got it replaced. I had this second Mirena Coil for almost five years, before I again saw a change in my skin. Instead of getting a third Mirena in spring 2020, I decided to go with a Skyla, because it has less hormones than the Mirena.

I made this change in part because, in the fall of 2019—ten years and two months after my diagnosis—I had an ultrasound full of promise. For the first time ever, the ready-to-rupture endometrioma that had been hanging onto my remaining ovary had shrunk considerably. A few months later, the ultrasound to check on the Skyla insertion revealed that the cyst had gotten too tiny to see, meaning it might even be gone!

This is amazing news of course, but, while I’d love to end on this happy note, in the interests of making this narrative as useful as possible, I should add that througout most of my endo adventure I have also had high blood pressure. In 2017, my current gynecologist, Dr. Untrustworthy, advised me to seek treatment when my reading reached the 150s over 110s at her office, but, because I attributed this spike to my opposite-of-fond feelings for this gyno, I failed to bring it up with my GP. A year later, my hypertension had gotten impossible to ignore: I was having bouts of lightheadedness the likes of which I hadn’t seen since 2010, when oral contraceptives would make my BP shoot up. In the fall of 2019, I got the official diagnosis of hypertension, which, in my case, is a genetic condition for which both my parents started treatment at around my age. I began taking medication immediately and, in early 2020, I went from vegetarian to vegan after reading that some people reverse their hypertension by eliminating animal fat from their diet. The combination of water pills and veganism worked for six months, but then my numbers started creeping up again. Today, I’m still a vegan and still searching for the medication that will keep my BP low.

Since beginning treatment for hypertension, I haven’t felt dizzy once, but, every four months or so, I’ll get a migraine that lasts a couple days. And even now pelvic pain will flare up, sometimes with sex and sometimes at random. But, by comparison with how those symptoms used to rule my life, these days I can almost forget I have endo.

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Through my decade of endometriosis, I learned two main lessons:

  1. You need to stand up for yourself when you go to the doctor.
  2. After Dr. Friend-Dad-Approved retired but before I moved across the country and ended up with Dr. Untrustworthy, I had one excellent gyno who acknowledged me as the foremost expert on the subject of my body, really listening to me before advising me on what to do. In fact, she’s the one who connected me with the physical therapist who helped me so much. The three other gynecologists I saw after my endo symptoms started were all jerks in one way or another. You have to be strong to survive the pain of this illness, for sure, but you might have to be stronger still to survive the medical professionals who treat endo.

  3. Love, art, and curiosity are all that matter.
  4. Almost dying and then almost drowning in medical debt at 28 helped me readjust my priorities in a hurry. I look back at myself before my first surgery, and all I see is how superficial I was. Not that I was obsessed with my appearance or with achieving some kind of money-driven idea of success, it’s more that I tended to smooth the world over, ignoring the texture of things in favor of living in a pretend place where everything was simple. Being confronted by my own vulnerability made everyone else’s more visible to me as well.

colorful wildlife painting art made for a Patreon patron, bear cub making heart with her paws
Gwenn Seemel
Share the Bear Cub
2021
acrylic, colored pencil, and marker on paper
8 x 6 inches

This brave little bear cub already has a forever home, but there are prints and pretty things with this image in my Redbubble shop as well as other artworks on paper that are still available.


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